2 months post op

[susieq]

Hi everyone. I am 2 months post op. I have not received a lot of information on Acoustic Neuroma. I am having problems and cant seem to get any where. My incision is draining and they dont know why. Has this happened to anyone else? How long does this sick feeling last? I have 2 kids ages 1 and 5. I have no family where i live. Friends dont seem to believe i feel the way i do. Surgery is over with and everyone thinks i should be back to chasing kids and cleaning house. Tumor is gone so the headache should be gone. My husband he isnt very supportive either. He works midnights and doesnt understand why i still feel this way and does not help much. My dr told us i would be back to work and doing good after 3 weeks. I hear it all the time from my husband. Please help with questions. I am so lost.

[Jim Scott]

Hi, Susie - and welcome.

I'm sorry to learn of your AN post-op problems, which, unfortunately, can and do occur.  Incision draining should be seen by your doctor as it can lead to more serious problems (e.g. infection) if left unaddressed.  It's odd that 'they don't understand why' .  Draining is often a result of the stitches being ineffective in some way and any competent physician should be able to see that and have it corrected.  I would insist on being treated or seek a different doctor for this issue. 

Your husbands insensitivity is, sadly, not as uncommon as we would like to think.  Most of that is due to a spouses lack of knowledge of what you're dealing with as well as, in some cases, a refusal to come to grips with the fact that you need more help/attention than he may be willing to give.  I strongly suggest you send for the ANA information booklets that describe the AN experience and explore other aspects of this condition, before and after surgery.  http://www.anausa.org/index.php/about-ana/patient-information-booklets?page=shop.browse&category_id=1.  The information in these modestly-priced ($1.50 to $3.00) booklets will help both you and your husband get a better understanding of why you can't just 'bounce back' from this very serious surgery. 

Your poignant plea for help is very moving and I'm sure you'll receive many replies.  Please know that you are not alone in this.  Many of us have been where you are now, and come through it O.K.  We're here to support you in whatever way we can, Susie, so please feel free to ask questions or sometimes, just 'vent'.  We'll understand - and respond, as needed. 

Jim

[JAndrews]

First thing you need to do is take care of the area that is having drainage. This is definitely an issue that needs to be taken care of. You need to see your surgeon. Your surgeon should definitely know what the problem is. Take care of the medical situation first. Its sad that we as the patients have to take complete charge of our healthcare. Be persistent, be your own advocate. I also have young children. My youngest was 4 months old when I had surgery. Dr. Brackmann told me I would be fine at 4weeks post-op. That was not the case---not even close. I love Dr. Brackmann/Schwartz they are excellent----this is the only part that did not come true for me. The fatigue/total exhaustion lasted a long time. My oldest was 2 1/2 yrs. It was the most difficult time of my life. Its still hard for me to talk about it. I joined this site to try to help as many people as I can. So here it goes....you have to give yourself plenty of time to heal. Not just physically but emotionally. Many of the people in your life are not going to understand what you are going thru. I think the harder your husband is on you about it the more depressed you will probably get. Do your best to make him understand. Maybe he can read up on the after effects of brain surgery, or maybe you could see a therapist who could help you deal with all of this. I know how much your children need you. I used  books,puzzles,flash cards, stuff like that and I would  lay in my bed and put them next to me. I did as many activites as I could from my bed...for about 10 weeks. I was very lucky to have my mom with us most of the time, and a very understanding husband. Even 5 months post-op I was still struggling to get thru the day. Many times I would go behind a door and just cry. I didn't want my kids to think it was them making me cry. My head felt "wonky" for a while, the exhaustion was overwhelming..sometimes I would be up for 2 hours and feel like if I didn't get into a bed immediately I would die. You are only 2 months post-op and have 2 little ones to take care of. Do you have any help? If not, is there someone who can give you a hand? The more help the better. But, please take care of the incision problem immediately...I am a nurse. Anything leaking from any incision 2 months post- op needs to be take care of.

[JAndrews]

I also forget to add that I am fine. There is a light at the end of the tunnel. I know it doesn't feel this way now...but it will come. I remember about 6-7 months after surgery I woke up and my head felt normal...like my head again!! It was an exciting day!